Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2007 General Board Posts >> I wish there were more places like this
        
(Message started by: CostaRicaKris on Oct 29^th, 2007, 10:33pm)

Title: I wish there were more places like this
Post by CostaRicaKris on Oct 29^th, 2007, 10:33pm

My husband has the wet form of Macular Degeneration. It's a progressive, incurable disease that is one of the leading causes of blindness. He is legally blind. He can't drive at night, probably shouldn't drive during the day. If you saw him on the street, you may think he is perfectly normal, but he's not. Lately he's been asking me if he looks okay. Today he tearfully admitted to me that he can't see himself in the mirror anymore. It broke my heart. I wish there was a site like this for people with Macular Degeneration. I haven't found one yet.

~Kris

Title: Re: I wish there were more places like this
Post by Linda_Howell on Oct 29^th, 2007, 10:41pm

Kris,

this family here is awesome and if there is any such support group that any of us can find....you'll be contacted right away.

Linda

Title: Re: I wish there were more places like this
Post by Rosybabe on Oct 29^th, 2007, 10:48pm

I am sorry to hear that Kris :'(.
I bet there must be something about that somewhere in the internet, maybe not especifically for the disease but for people who is in the same circunstance as your husband. People who lost their sight by a disease.

My prayers go to you and your husband, so he can find relief somehow.

Hugs

Rosy.

Title: Re: I wish there were more places like this
Post by Kevin_M on Oct 29^th, 2007, 10:54pm

on 10/29/07 at 22:33:37, CostaRicaKris wrote:

I wish there was a site like this for people with Macular Degeneration. I haven't found one yet.

This place is where the tornado of clusters set the house down and kills one evil of being alone and uninformed. We still have to manage with the wickedness that is CH but much better thanks to DJ, the man behind the curtain.

I can't image not having a site for such a terrible degenerative disease that changes a person's life so much. With the loss of sight though, the sufferers would be handicapped to be their best own advocates on a website, it would up to the supporters of them to converse and help each other and them it seems.

Title: Re: I wish there were more places like this
Post by Rosybabe on Oct 29^th, 2007, 10:58pm

http://www.mdsupport.org/nsg.html

http://www.mdsupport.org/support.html

they even have a forum like this one...

Hope it helps a little...

Title: Re: I wish there were more places like this
Post by aloneuk on Oct 30^th, 2007, 6:01am

:'(

ive lost sight in one eye (different reasons) and the sight in the other eye is getting worse, so to a degree i know what your saying..

We are all here for both of you. Hug him tight !
[smiley=hug.gif] to both of you

ike

Title: Re: I wish there were more places like this
Post by Mr. Happy on Oct 30^th, 2007, 6:08am

http://www.blindness.org/msgboard/forum.asp?id=16&sortBy=3&sortDesc=true

Title: Re: I wish there were more places like this
Post by Sean_C on Oct 30^th, 2007, 6:45am

[smiley=hug.gif]

Title: Re: I wish there were more places like this
Post by CostaRicaKris on Oct 30^th, 2007, 8:54am

Thanks guys :-)

I will check out those links.
Kevin, you're right. It is a bit different when you are dealing with something like blindness. We have a computer program called Zoom that is for people that with low vision, it enlarges everything, but the whole thing is so frustrating for him he doesn't even want to try to get on the computer.

I guess if there are forums like this for people that are blind or going blind, there are probably is a lot of supporters because of the nature of the illness. Until I found this site, message boards were totally new to me. Hey, maybe there's a Red Bull equivalent for Macular Degeneragtion!

My husband and I really are not the type of people that sit around feeling sorry for ourselves. I was just feeling down about that last night and I really appreciate the support.

Thanks
~Kris

Title: Re: I wish there were more places like this
Post by Emily on Oct 30^th, 2007, 9:12am

Well, it's a good thing, because that is what we are here for. ;)

I hope the links posted by Rosy help and can provide both you and your husband with support and answers as ch.com has done.

Sending a [smiley=hug.gif]

Em

Title: Re: I wish there were more places like this
Post by sandie99 on Oct 30^th, 2007, 9:18am

[smiley=hug.gif]

Title: Re: I wish there were more places like this
Post by DennisM1045 on Oct 30^th, 2007, 1:07pm

Kris, dealing with one illness in the family is hard enough. Having both of you affected by your own beasts has to be hard to handle. I'm so sorry. Vent away girl. :'(

[smiley=hug.gif]

-Dennis-

Title: Re: I wish there were more places like this
Post by Jonny on Oct 30^th, 2007, 7:46pm

on 10/30/07 at 08:54:33, CostaRicaKris wrote:

My husband and I really are not the type of people that sit around feeling sorry for ourselves.

I may be out of line here, but here goes.....What does feeling sorry for yourself have to do with getting support for your husband?

Start clicking those damn links and find a fourm where your husband can talk to people that know what hes going through, damn it!

If you have to sit there and read and type for him so be it, do it! >:(

Im done now, sorry!

Title: Re: I wish there were more places like this
Post by CostaRicaKris on Oct 31^st, 2007, 2:11am

on 10/30/07 at 19:46:42, Jonny wrote:

Yeah, I know dude, working on it!

Seriously, how do I do that when he is not in the least bit interested, strap him down to a chair? I'm looking into the links to see what I can find. He never even wants to talk about his vision. That's why it was such a big deal that he even said that to me. Maybe I can warm him up to it all by talking to him about what I read on-line.

Title: Re: I wish there were more places like this
Post by CostaRicaKris on Oct 31^st, 2007, 2:24am

Jonny,
Just so you know - I didn't think you were out of line.